A Day in the Life of a Child With RLS

Having had restless legs syndrome (RLS) since I was a child, I've recently become fascinated with watching my goddaughter, who has a really bad case of RLS. Her strength, dignity, and the overall manner in which she carries herself in the face of such adversity need to be bottled and sold.

Observing how my goddaughter manages her RLS

She came to spend time with me and my children towards the end of the long vacation, and I decided to watch her, talk to her, and see how she deals with restless legs syndrome on a typical day. I chose a Saturday that I was going to spend a full day with her and also made sure there were a fair amount of different types of activities.

By the time I got up at 6 AM, she was already up and giggling with my kids. They looked so happy and without a care in the world. I envied them. They all came jumping at me as soon as they saw me, chants of good mornings filling the air, and my heart smiled like it always does each time I see them. I went into the kitchen and whipped up a quick batch of pancakes, and by 8 AM we were on our way to an exhibition.

I knew exactly what she was going through

All the kids were having fun, but I noticed my goddaughter gravitated more toward rides that provided more adrenaline, and she didn't want to do activities that required sitting still and had no stimulation, like getting fake tattoos. I also noticed she never sat down all throughout the 4 hours she spent there, and when it was time for us to leave, her feet kept hitting the back of mine in the car. I didn't complain a bit, because I knew exactly what she was going through.

Our next stop was a Chinese restaurant for lunch. She chose to sit at the exit so it was easy for her to get up and stretch if need be. I was quite impressed that she had her own tips and tricks at such a young age.

It was a relatively uneventful lunch, until my goddaughter moved her legs too fast and had all the drinks on the table spilling in every direction. She darted me a scared, apologetic look; I just smiled, reassuring her, and I could see her visibly relax and release her breath. I totally understood. I've been there many times over. I know the fear of knocking things down by mistake and having adults yell at you or give you the stink eye. I know it all too well.

Activity and conversation to placate restless legs

Instead of going home, I decided to stop at the park and let them run amok. Truth be told, my own legs needed a little bit of chaos, too. So we just ran around the park, pushed each other on the swings, went down the slides, and built sand castles. For a child with restless legs syndrome, this was heaven for her.

She just kept going. I was sure she was going to crash at some point. But I also knew that if I tired her out, her legs would be quite happy at the end of the day.

The drive back home was about 15 minutes, and I could see the children almost falling asleep, so I engaged them in conversations — because, let's face it, I didn't have the strength to carry them all inside, and neither did I want cranky kids on my hands when I woke them up.

A weighted blanket came in handy

Luckily, the conversation tactic worked, and as soon as we got in, I sent them off to the bathroom. I then made some pepper soup for dinner, we read "I Love My Hair" by Anastasia Tarpley, and before I was done, all the kiddos were fast asleep.

I stood by the door for almost 15 minutes watching them, and I could see my goddaughter's leg jerking from time to time. Poor baby couldn't catch a break even when she was asleep. I grabbed a weighted blanket and covered her, and that seemed to do the trick. I switched off the lights and went to bed, too.

All was well until about 3 AM. I heard a knock on my door. "I can't sleep, Auntie," came the tiny voice just outside my door.